Mom Whose Autistic Children Got Better Shares More of Her Story With UsMarch 8, 2011
Last week we told you about Meleah Corner, who won a major court case in NC allowing her children to continue to be treated with HBOT. This week we had the opportunity to interview her and hear her story in greater detail. You won’t believe what she had to go through.
Meleah Corner has four sons, ages 9, 7, 5, and 3. The three older boys have autism spectrum disorder. The eldest has a milder form of autism, with social awareness difficulties and emotional disregulation. The seven-year-old’s case is the most severe with more typical autism symptoms—difficulty with speech and eye contact, for example—though tremendous progress has been made since his initial diagnosis because of various interventions. The third son’s autism is somewhere in between the two.
Meleah is legally blind, able only to distinguish between light and dark. Her parents were strong advocates for her as she was growing up, insisting that she attend classes with fully sighted children instead of being placed in a Special Ed class. They insisted that the state make any necessary accompromodations, according to the law. Undoubtedly their example informed Meleah’s advocacy for her sons.
The family learned about hyperbaric oxygen therapy (HBOT) soon after the first son was diagnosed. They figured, “It certainly won’t hurt, and might help,” so she began to search for a doctor who could prescribe HBOT therapy for him—and for a location to get him treated. HBOT is expensive.
She soon learned of a federal law that says if a child has Medicaid, the state is obligated to treat him if a doctor prescribes it. Meleah found a neurologist, Dr. Jean-Ronel Corbier, who was very supportive of HBOT, which she says is extremely unusual among neurologists. He gave her a prescription, and also ordered that SPECT imaging be performed. SPECT is an acronym for Single Photon Emission Computerized Tomography. It’s a sophisticated nuclear medicine study that looks directly at cerebral blood flow and indirectly at brain activity. The neurologist wanted to have a visual map of any blood flow deficiencies and their location. The imaging and the HBOT were performed without controversy at a hospital.
But when she submitted the bills to North Carolina Medicaid, the coverage was rejected. The neurologist sent a request for the federal Medicaid program to cover it, which is standard procedure if it’s not covered by the state. The two older boys were invited to go to a facility mostly pro bono, though the parents had to pay for the younger son’s treatment themselves. They then filed an appeal to ask that the state be required to reimburse for the costs that they didn’t cover up front.
This first appeal, filed in early 2009, was filed with the NC Office of Administrative Hearings (OAH). Meleah couldn’t get an attorney to represent them, so she represented herself—and she came well-prepared. Dr. Paul G. Harch kindly testified for her even though she had never met him before, discussing the safety and efficacy of HBOT for autistic patients, and the evidence seemed incontrovertible. But in June 2009 the administrative judge ruled in favor of the state. Meleah says, “The findings of fact and of law that the judge listed in her ruling were very ambiguous, and didn’t address several of the issues we were in court for.” It was especially puzzling since the state had been woefully unprepared, and put on no case whatsoever, other than to say HBOT is not a covered therapy for autism—a point that was irrelevant, since the law requires Medicaid to cover whatever a doctor prescribes.
Meleah was able to find a legal aid organization to take the case pro bono, and an appeal was filed in NC superior court. The case was heard in September 2009. The same people testified, and the same evidence was presented, but this judge found in her favor and ruled that Medicaid had to pay all the fees for the HBOT treatment.
Dr. Corbier then did a follow-up SPECT to see if the HBOT had produced any functional, clinical progress. The scans clearly showed that the boys had needed it, and that HBOT had made a dramatic improvement in cerebral blood flow—with specific, measurable improvement in the way their autism presented itself.
The neurologist then asked Medicaid to cover another set of 40 treatments. The state promptly denied it. So in May 2010 everyone found themselves back in the OAH, before the same judge who heard the earlier case.
Dr. Harch once again testified for her, but this time, the state was in attack mode. The Undersea & Hyperbaric Medical Society, or UHMS, is an organization of hyperbaric medicine professionals, but they have a limited list of “approved” treatments for HBOT, and autism isn’t one of them. The state’s lawyer leveled accusations at Dr. Harch, making it look as if he had done something unethical because he was no longer a member of UHMS; and a doctor from UHMS said there was “no proof” that HBOT helps autism and that such claims are “crazy.” A well-known psychiatrist who is much-published in the autism field and is the head of autism research at the University of North Carolina testified that he had “never heard of HBOT being prescribed for autism.” He even testified that decreased profusion (blood flow in the brain) has nothing to do with autism—even though he himself had published a study ten years earlier documenting the fact that autistic individuals across the board have decreased perfusion! Never mind the fact that it is not normal for a human being to have decreased blood flow to the brain.
Perhaps because the state put on such an aggressive case—with experts who contradicted their own testimony—this time the administrative judge ruled that Meleah was correct, and Medicaid was obligated to cover the treatments.
After OAH issues its ruling, the state has thirty days in which to decide whether they agree or disagree with ruling. Not surprisingly, the state disagreed with the judge, so in December 2010, Meleah had to file in Superior Court once again. The same testimony was given from the same individuals, and in January 2011 the court upheld the decision. Medicaid has to pay up, every penny. The state will not be appealing the decision further, and will cover HBOT for all three of the children.
We asked Meleah if she had anything else she’d like to tell our readers. She paused, then said, “Yes. I think doctors and physicians need to be supportive of their patients even if it means going to court with them—we could not have won if we didn’t have the testimony of Dr. Harch and Dr. Corbier, or if we’d had someone who wanted to charge an outrageous fee to testify. A lot of doctors just don’t want to get involved. Be bold! This is an efficacious treatment! Things don’t change if doctors aren’t willing to stick their neck out there. The same thing goes for families: nothing will change unless the parents of young patients aren’t willing to stand up there and fight for change.”
We couldn’t agree more, Meleah. Congratulations to you and your family for such a courageous and well-fought battle!
Because the technology is not under patent, no one company has the incentive to spend the money for extensive scientific research. ANH-USA is working on a strategy to get broader FDA approval of hyperbaric oxygen therapy, and we’ll keep you posted as things develop.